Parental knowledge and attitudes toward genetic counseling and childhood genetic testing for congenital anomalies in Qatar

Abstract

This study aims to evaluate parental knowledge and attitudes toward genetic counseling and testing in the context of pediatric plastic surgery in Qatar. It assesses baseline knowledge to identify educational gaps and factors that may contribute to fear or reluctance in managing children with congenital anomalies. Parents of children with congenital anomalies visiting the pediatric plastic surgery clinic at Sidra Medicine participated in an online questionnaire from October 2022 to February 2023. The 37-question survey covered demographics, knowledge, and attitudes toward genetic counseling and testing, with knowledge scores ranging from 1 to 12 (scores above 9 indicating high knowledge). Responses were collected from 160 parents, representing various regions: Asia (26.6%), North Africa 25.3%, the Middle East 20.3%, America/Europe 5.7%, and Qatar 22.2%. Among them, 22.9% reported consanguinity, and 37% had children who underwent genetic testing. American/European parents (p = 0.016) and those with higher education (p = 0.006) showed greater genetic knowledge. Qatari parents had high knowledge 45.7% but lower perceived benefits and higher barriers. Consanguineous parents (p = 0.003) and those referred by medical providers (p < 0.001) had more positive attitudes toward genetic testing, while those with no prior testing experience or without another child with a genetic disorder displayed negative attitudes. This study highlights the need for culturally appropriate education on genetic counseling and testing for parents of children with congenital anomalies. Genetic counselors should consider education levels and consanguinity when discussing genetic testing to empower parents in making informed decisions.